Impact of proposed changes on NDIS participant with Lymphoma and daughter's future eligibility

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Submission to the National

Disability Insurance Scheme

Amendment (Securing the NDIS for

Future Generations) Bill 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au

Date: 31.5.26

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a family member and carer of an NDIS participant.

I want to outline the harm this Amendment Bill will cause if it passes Parliament. This Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny and amendment before it proceeds. This Bill will not secure the NDIS for future generations.

Parliamentary Scrutiny and Transparency

The issue: The consultation period for the Amendment Bill is two weeks, which is insufficient to allow for appropriate consultation, considering accessibility and communication needs. The Australian Government Guide to Policy Impact Analysis says consultation should occur for a minimum of 30 days where possible.

The short timeline impacts me by restricting my understanding of the changes

I do

do not have the time to study the changes appropriately and make up my own individual submission. I am having to rely on someone else’s template. The restricted timeline is not necessary, and 30 days is very possible.

Recommendation: Amend the consultation period for a best practice minimum of 30 days.

Key decisions left to ministerial instruments, not law

The issue: The Bill allows Ministers to change who gets NDIS support (Schedule 1 Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule 3) by signing an instrument, without going back to Parliament. The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written.

How this affects participants: The decisions that shape the lives of participants, whether they qualify for the NDIS and what supports they can access, could be changed without parliamentary debate or public scrutiny. Participants may not know supports or eligibility rules have changed until their plan is affected.

Living with a disability and relying on funding is a very difficult and insecure life. Not knowing if funding is available for the future is scary. Knowing the funding could disappear with no notice is terrifying. My daughter could not survive without NDIS funding. I am her only informal support, am aging and I have Lymphoma. If this Bill is passed and it is deemed she no longer reaches eligibility with little or no warning, the outcome to her and the community would be devastating.

Recommendation: Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.

Existing participants face narrower criteria and fewer rights

to challenge decisions

The issue: The Bill changes the rules for existing NDIS participants and makes it

harder to challenge some decisions about supports and funding. It also restricts

when you can request a reassessment, removes review rights for automatic plan

renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8).

Combined with restrictions on reassessment requests (Part 2), automatic plan

renewals without review rights (Part 5), and unreviewable funding reductions (Part

4), existing participants face narrower criteria with significantly fewer avenues to

challenge decisions about their supports.

How this affects participants: This does not protect participants already on the

NDIS, who could be reassessed under stricter rules. If someone’s funding is reduced

or their plan renewed automatically, they may have limited or no ability to challenge

that decision. This could make it harder for people to get extra support when their

circumstances or disability change.

As previously stated, relying on funding which can be cut anytime is living with

constant insecurity. When budgets are cut to a degree that adequate supports

cannot be provided, there must be an avenue to challenge this. I have had to do this

in the past, and had I not been able to the consequences would have been my

daughter regressing in her development toward independence. If inadequate funding

cannot be challenged and corrected disabled participants will decline and not reach potential independence. I have also needed to request a review when my daughters

circumstances changed. Had I not been able to do this she would have not been

able to continue with her development toward her NDIS Goals. This part of the Bill is

not the way forward for the NDIS Scheme.

Recommendation: Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments

  • preserved. Keep in place the ability for NDS participants to challenge and ask for
  • reviews on changes in funding for all new plans.

Unreviewable ministerial power to cut funding across all support categories

The issue: The Minister can reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4). This applies across all budget categories. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5).

How this affects participants: A participant’s community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. Participants who save unspent funds across plan periods for high- cost items will lose that ability entirely.

We all know following tight budgets is difficult. Saving for an item is essential. If this ability is taken away, how do we possibly purchase those high-cost items?

Recommendation: Require that unspent funds carry over at plan renewal for participants saving for high-cost items and require independent review rights before any funding reduction takes effect.

Requirement to exhaust treatment options before eligibility

The issue: A person with disability will need to exhaust treatment options before they can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of whole-of-person assessment, replaced by single eligible impairment consideration (Schedule 1 Part 3). The note that previously acknowledged environmental factors and other ineligible impairments could affect support needs will be removed (Schedule 1 Part 3).

How this affects participants: People with disability will need to prove their impairment cannot be treated before they access the NDIS. Once in the scheme, 4

Unvalidated Functional Capacity Assessment Tool Risks

Misidentifying Need

The issue: The Bill shifts assessment from whole-of-person consideration to a single eligible impairment (Schedule 1 Part 3). Read together with the eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment.

The named assessment tool is the Instrument for Classification and Assessment of Support Needs (I-CAN). I-CAN requires validation to ensure it will sufficiently identify the needs of all people with disability, including those whose needs may be fluctuating or episodic and may not be captured through a point-in-time assessment, and to ensure it is culturally appropriate for First Peoples with disability.

How this affects participants: If the assessment tool does not accurately capture the full extent of a person’s disability, including needs that fluctuate or vary over time, a participant may be found ineligible or have their supports undercounted, with no guarantee the result reflects their actual experience.

In my experience within the health field, it is common for inaccurate answers during

most survey type assessments. This is due to a myriad of reasons. This will be more

common within the disability sector. Using any computerised survey to assess

function is not accurate and can be harmful to a disabled person. The I-CAN, in

particular, has not been validated appropriately for this use.

Recommendation: Do not proceed with any computerised or survey based

functional capacity assessment tool unless it has been demonstrably validated to

identify the needs of all people with disability, including those with episodic or

fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.

Supports cut before replacement system is ready

The issue: From 1 October 2026, the government has announced funding for social, civic and community participation supports will be cut by 50 per cent and capacity building daily activities by 10 per cent for all participants, reductions that will be implemented through the ministerial instrument power in Schedule 1 Part 4. It has also announced 160,000 NDIS Participants to be cut completely from the scheme.

The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.

How this affects participants: Supports that help participants connect with their community, build skills and maintain independence may be cut before anything exists to replace them, leaving participants without supports. These supports are often what keep people safe and moving forward.

My daughter’s survival is fully reliant on her funding. Small cuts here and there are managed but cuts suggested in this Bill means goals are no longer achievable, and the focus moves immediately to minimising harm/regression. If she were to be cut from the system completely she would need considerable alternative supports

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immediately. 50% in Community Participation and/or 10% in Capacity Building would

also require a high level of additional support quickly to prevent regression and extra

community burden. There must be appropriate systems up and running with no

waiting times in place. Foundation Supports must be fully accessible for all

participants as soon as funding is cut.

Recommendation: Require that no participants be cut from the system, or reductions to community participation or capacity building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports.

Thank you for your time.